Subscribe to RSS
DOI: 10.1055/s-0040-1712115
Assumptions about Decision-Making Capacity and Aphasia: Ethical Implications and Impact
Publication History
Publication Date:
25 June 2020 (online)
Abstract
This article explores the issue of aphasia and decision-making within the context of clinical ethics and patient rights. The cases described illustrate the danger of making assumptions about the inherent competence of people with aphasia and the life-altering consequences if no attempt is made to “accommodate” or support communication when competence may be masked by aphasia. Speech-language pathologists have a moral obligation and a key role to play in providing communication support that may serve to reveal a person's intact capacity to make specific decisions, as well as in supporting the steps involved in the decision-making process. This role also extends to providing guidance, education, and training for others involved in evaluating the decision-making capacity of people with aphasia. Communication support strategies useful at each stage of the decision-making process are detailed.
Financial Disclosures
Aura Kagan receives a full-time salary from the Aphasia Institute (ongoing) and has no nonfinancial disclosures related to this article.
Elyse Shumway receives consulting fees from the Aphasia Institute (ongoing) and has no nonfinancial disclosures related to this article.
Sheila MacDonald is the author of the Functional Assessment of Verbal Reasoning and Executive Strategies (FAVRES) and has financial interest in CCD Publishing.
-
References
- 1 Weisenburg T, McBride KE. Aphasia: A Clinical and Psychological Study. New York: Commonwealth Fund; 1935
- 2 Critchley M. Testamentary capacity in aphasia. Neurology 1961; 11 (09) 749-754 [Cited by: Rada RT, Porch BE, Kellner R. Aphasia and the expert medical witness. Bull Am Acad Psychiatry Law 1975;3(4):231–237]
- 3 Rada RT, Porch BE, Kellner R. Aphasia and the expert medical witness. Bull Am Acad Psychiatry Law 1975; 3 (04) 231-237
- 4 Eadie TL, Charland LC. Ethics in speech-language pathology: beyond the codes and canons. Can J Speech-Lang Pathol Audiol 2005; 29 (01) 27-36
- 5 Cassell EJ. Life as a work of art. Hastings Cent Rep 1984; 14 (05) 35-37
- 6 Horner Catt J. The language of ethics in clinical practice. J Med Speech-Lang Pathol 2000; 8 (03) 137-153
- 7 Horner J, Modayil M, Chapman LR, Dinh A. Consent, refusal, and waivers in patient-centered dysphagia care: using law, ethics, and evidence to guide clinical practice. Am J Speech Lang Pathol 2016; 25 (04) 453-469
- 8 Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 8th ed. New York, NY: Oxford University Press; 2019
- 9 Cassell EJ. The function of medicine. Hastings Cent Rep 1977; 7 (06) 16-19
- 10 Rodríguez-Prat A, Monforte-Royo C, Porta-Sales J, Escribano X, Balaguer A. Patient perspectives and dignity, autonomy and control at the end of life: systematic review and meta-ethnography. PLoS One 2016; 11 (03) e0151435
- 11 Braunack-Mayer A, Hersh D. An ethical voice in the silence of aphasia: judging understanding and consent in people with aphasia. J Clin Ethics 2001; 12 (04) 388-396
- 12 Convention on the Rights of Persons with Disabilities and Optional Protocol. UN; . Available at: www.un.org/disabilities/documents/convention/convoptprot-e.pdf . Published 2016. Accessed January 14, 2020
- 13 Ferri D. Reasonable accommodation as a gateway to the equal enjoyment of human rights: from New York to Strasbourg. Soc Incl (Lisboa) 2018; 6 (01) 40-50
- 14 Kim ES, Suleman S, Hopper T. Decision-making by people with aphasia: a comparison of linguistic and nonlinguistic measures. J Speech Lang Hear Res . DOI: https://doi.org/10.1044/2020_JSLHR-19-00182
- 15 Brady Wagner LC. Clinical ethics in the context of language and cognitive impairment: rights and protections. Semin Speech Lang 2003; 24 (04) 275-284
- 16 Kagan A, Simmons-Mackie N. From my perspective: changing the aphasia narrative – laying down the gauntlet: our modest proposal for an elevator pitch describing the aphasia services SLPs deliver – and why SLPs are the ones to provide them. ASHA Lead 2013; 18 (11) 6-8
- 17 Kagan A, Black SE, Duchan FJ, Simmons-Mackie N, Square P. Training volunteers as conversation partners using “Supported Conversation for Adults with Aphasia” (SCA): a controlled trial. J Speech Lang Hear Res 2001; 44 (03) 624-638
- 18 Jayes M, Palmer R. Initial evaluation of the Consent Support Tool: a structured procedure to facilitate the inclusion and engagement of people with aphasia in the informed consent process. Int J Speech Lang Pathol 2014; 16 (02) 159-168
- 19 Carling-Rowland A, Black S, McDonald L, Kagan A. Increasing access to fair capacity evaluation for discharge decision-making for people with aphasia: a randomised controlled trial. Aphasiology 2014; 28 (06) 750-765
- 20 Hebert D, Lindsay MP, McIntyre A. , et al. Canadian stroke best practice recommendations: stroke rehabilitation practice guidelines, update 2015. Int J Stroke 2016; 11 (04) 459-484
- 21 Freedman M, Stuss DT, Gordon M. Assessment of competency: the role of neurobehavioral deficits. Ann Intern Med 1991; 115 (03) 203-208
- 22 Suleman S, Kim E. Decision-making, cognitive, and aphasia: developing a foundation for future discussions and inquiry. Aphasiology 2015; 9 (12) 1409-1425
- 23 Zuscak SJ, Peisah C, Ferguson A. A collaborative approach to supporting communication in the assessment of decision-making capacity. Disabil Rehabil 2016; 38 (11) 1107-1114
- 24 Moye J, Karel MJ, Edelstein B, Hicken B, Armesto JC, Gurrera RJ. Assessment of capacity to consent to treatment: challenges, the “ACCT” approach, future directions. Clin Gerontol 2007; 31 (03) 37-66
- 25 Barry L. ‘He was wearing street clothes, not pyjamas’: common mistakes in lawyers' assessment of legal capacity for vulnerable older clients. Leg Ethics 2018; 21 (01) 3-22
- 26 Kagan A. Supported conversation for adults with aphasia: methods and resources for training conversation partners. Aphasiology 1998; 12 (09) 816-830
- 27 Kagan A. Supported conversation for adults with aphasia (SCA). In: Damico JS, Ball MJ. , eds. The SAGE Encyclopedia of Human Communication Sciences and Disorders. Los Angeles, CA: SAGE Publishing; 2019: 1885-1887
- 28 Kagan A, Kimelman MDZ. Informed consent in aphasia research: myth or reality. Clin Aphasiol 1995; 23: 65-75
- 29 Kagan A, Shumway E, Thesenvitz J, Brookman C. Aphasia Institute Community Hub: Introduction to SCA™ eLearning. Aphasia Institute; . Available at: https://www.aphasia.ca/communityhub/ . Published 2019. Accessed January 14, 2020
- 30 Carling-Rowland A, Wahl J. The evaluation of capacity to make admission decisions: is it a fair process for individuals with communication barriers?. Med Law Int 2010; 10 (03) 171-190
- 31 Guo KL. DECIDE: a decision-making model for more effective decision making by health care managers. Health Care Manag (Frederick) 2008; 27 (02) 118-127
- 32 MacDonald S, Johnson CJ. Assessment of subtle cognitive-communication deficits following acquired brain injury: a normative study of the Functional Assessment of Verbal Reasoning and Executive Strategies (FAVRES). Brain Inj 2005; 19 (11) 895-902
- 33 Browning M, Bigby C, Douglas J. Supported decision making: understanding how its conceptual link to legal capacity is influencing the development of practice. Res Pract Intellect Dev Disabil. 2014; 1 (01) 34-45
- 34 McCormick MN, Bose A, Marainis T. Decision-making capacity in aphasia: SLT's contribution in England. Aphasiology 2017; 31 (11) 1344-1358
- 35 Suleman S, Hopper T. Decision-making capacity and aphasia: speech-language pathologists' perspectives. Aphasiology 2016; 30 (04) 381-395
- 36 Brady Wagner LC. Ethical framework of supported decision-making for persons with aphasia. Perspect ASHA Spec Interest Groups 2018; 3 (02) 80-87
- 37 Penn C, Frankel T, Watermeyer J. Informed consent and aphasia: evidence of pitfalls in the process. Aphasiology 2009; 23 (01) 3-32
- 38 Code of Ethics. American Speech-Language Hearing Association (ASHA). Available at: https://www.asha.org/Code-of-Ethics/ . Published March 1, 2016. Accessed January 13, 2020
- 39 Speech-Language and Audiology Canada Code of Ethics. Speech-Language and Audiology Canada; . Available at: https://www.sac-oac.ca/sites/default/files/resources/2016_sac_Code_of_Ethics_en.pdf . Published 2016. Accessed January 13, 2010